Writing for Two

Carolyn Roy-Bornstein, LiteraryMama

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Physician, writer, and mother Carolyn Roy-Bornstein

Multimedia

• Learn why educating the whole family about TBI is important. The Role of Family-Centered Care
• On April 24, 2009, BrainLine had the opportunity to sit down with Dr. Kreutzer and Dr. Stejskal to talk about their work with people with traumatic brain injury and their families. Produced by Victoria Tilney McDonough and Brian King. Transcript of this video. BrainLine Talks with Dr. Jeffrey Kreutzer and Dr. Taryn Stejskal About What Happens to a Family After Brain Injury
• Carolyn Rocchio, a mother and longtime caregiver as well as a nationally recognized advocate, author, and speaker in the field of brain injury, shares the story of her son's brain injury. This is an excerpt from BrainLine's webcast Caregiving and TBI: What You Need to Know. See full webcast here. Carolyn Rocchio: A Mother and Caregiver's Story
• Carolyn Rocchio, a mother and longtime caregiver as well as a nationally recognized advocate, author, and speaker in the field of brain injury, talks about learning to be a caregiver for her son with TBI. This is an excerpt from BrainLine's webcast Caregiving and TBI: What You Need to Know. See full webcast here. Caregiving for Someone with a TBI: A Unique Experience
• The prolonged period of stress after a loved one has a TBI can last years. Asking for help, being patient and persistent, and knowing that life may be different but it will get easier and better are crucial points for caregivers. Patience and Persistence Are Key for Caregiving

I've journaled all my life. As a girl, I called my journal a diary. I got one every year for Christmas: soft pink ledgers with tiny locks and metal keys. In them, I detailed my middle school years: fish net stockings and Girl Scout meetings. I poured my heart onto their pages in high school: my first kiss with Donny Gatton, tears spilled over Jim Croce's death.

Later in life, I chronicled more salient events: my graduation from college, then medical school, my pot-luck hippie wedding, the births of my children. I wrote in spiral-bound notebooks that are stacked by the dozens on shelves in my bedroom closet. Now, if my husband and I want to remember the meal we had on our anniversary in 1989, I simply open the appropriate book and voila! Details!

"I had the grilled halibut with the Chimichurra sauce. You had the peppercorn pate. Remember?"

Several years ago, all that changed. The ink dried up. My son Neil, then 17, was hit by a drunk driver while walking his girlfriend Trista home after a study date at our house. Trista sustained a massive head injury and was flown from our small town to Boston by helicopter. Bending over her stretcher to kiss her good-bye, I saw her fixed and dilated pupils and I knew she would not make it. Her parents took her off life support the next day. Neil was loaded into an ambulance bound for Boston, as well. At first, the doctors thought his only injury was a broken leg. They ordered a CAT scan of his head as a precaution. That precaution turned out to be a subdural hematoma, a subarachnoid hemorrhage, and a fractured skull. His brain was bleeding.

I gave my husband a list of things we might need in the hospital: clothes for Neil, video games for when he felt better, knitting and books for me to pass the time. My journal? Not on the list. Over the next week Neil had three CAT scans, two leg operations, low blood pressure. He was put on anti-seizure medication. Through it all my pen was silent.

At first, it just didn't occur to me to write. This was life, not art. My boy needed me. I listened to the doctors describe his injuries. I prayed for his recovery. I sat in the waiting room through two operations, too worried to pick up a pen. But as the days stretched out through long hours of physical therapy, as we moved from the ICU to the step-down unit, I knew it was more than fear or worry that paralyzed me. More than sheer writer's block. I knew I would write eventually, maybe even soon. But I needed some distance first. I felt too raw at the moment. Too in the moment.

The British novelist Graham Greene called the necessary distance a writer must have from his or her material "a sliver of ice in the heart of the writer." And I did not yet have that sliver of ice. My heart was still warm with worry for my boy.

We brought Neil home in the dead of winter, a week after the accident. He was thin and weak. He had lost weight. I took a leave from my position as a pediatrician at a community health center. I made Neil high-calorie milk shakes to drink. I kept track of everything he ate and recorded each trip to the bathroom. He was on anti-seizure medications and pain killers. I made charts for those, too, terrified that I would overdose him on Percocets or forget a Dilantin and cause an epileptic attack. I followed behind him as he teetered around the house with his walker.

Neil slept at first on a pull-out couch in the living room; I slept on a mattress on the floor next to him. Later, when he slept in his own room, we set up an intercom system, like parents of infants, in case he woke at night and needed us. My heart ached for him; one moment he was holding hands with his girlfriend walking her home, the next, she was gone — dead and buried before he was even discharged from the hospital. Still the page remained blank.

Notebooks lay all around the house. There was one for my essays, one for my health column for parents published in the local newspaper. There was one for fiction and one for my novel-in-progress. Then there was the one where I kept track of where each piece was submitted, when they were accepted and when they would be published. Now all these notebooks seemed to be calling out to me, beckoning me back. I once went so far as to open up my journal to the last thing I wrote before the accident. But it was like watching a train approaching a woman on the tracks and having no way to warn her: blithely breezy words, then nothing. I slammed it shut.

Partly, my inability to write was due to the sheer amount of work it took to care for Neil each day, and a lack of energy to do anything else. Partly, I wasn't yet sure how to write about the ways my son's life had so drastically changed. So I ignored my notebooks and focused on the tasks at hand: setting up equipment, arranging appointments.

After nearly a month, Neil went back to school. It was still January, but the cold snap that gripped us the night of Neil's accident had lifted. Soggy puddles of snow had replaced the treacherous chunks of ice on our sidewalk. I loaded him into the front seat and tossed his walker in the back. It was the first time Neil had been out-of-doors since we carried him up the stairs to our house the day of his discharge. I looked up at the menacing sky. But Neil's vision was focused downward, negotiating this new terrain with concentration and care.

That morning we had a "re-entry meeting" with the principal, the school nurse, the guidance counselor, and all of Neil's teachers. We worked out a game plan: part time course-work at first, a "book buddy" to help him with his assignments, AP classes scaled back to regular. After the meeting, I gave him a hug and watched him teeter off down the hall with his walker. I longed to follow behind him like I did at home, my arms open wide to catch him if he were to fall. It was like kindergarten all over again.

I went home alone. I puttered around. I threw a load of clothes into the washing machine.

I sat at my dining room table drinking black coffee and looking out the window. It was a cold gray day. Thick clouds loomed over the bare oaks in my yard. My boy, my brain-injured boy, was out in the world, and I was at home — useless, unable to help him.

I knew that, somehow, I needed to gain control of my world again. I grabbed a notebook and pen and began to write. The words came quickly. The phone call. The crash. The cries of pain. The weeks of hard work. Physical therapy. Anti-depressants. I got it all down. My hand cramped. I soaked the pages with tears. I lost track of time. I chronicled everything right up to the events of that very morning. His first day back at school. The meeting. The walker. My fears and anxiety.